Without a Word_ How a Boy's Unspoken Love Changed Everything - Jill Kelly [37]
Elizabeth got HB up in his stander for 30 minutes today and he loved it. I loved the look on his face as he gazed at the twinkle lights and colorful bulbs on the tree. The simple things mean so much to Hunter. Standing up for 30 minutes is a big deal. Breathing without apnea and secretions is a big deal. Life itself is the greatest gift to him. He has taught us so much. I can’t believe how shallow my life and existence were before Hunter. He makes life worth living. As difficult and heartbreaking as it is to see my son suffer, watching him enjoy every ounce of life is truly indescribable. Wow….
As Hunter continued to grow, so did our family with the addition of Camryn. There was never a dull moment for the Kelly family, and although Hunter needed constant care, the girls were just as demanding of my attention. I often felt torn between spending time with the girls and taking care of Hunter. However, God started to intervene in miraculous ways.
Year Four, 2000–2001
January 13, 2000 (Florida)—Grammie held Hunter close to the ocean waves, and when they rushed in and touched his cute little toes, he pulled his legs back. It was amazing. Just to see him move his legs like that all by himself was such a treat.
Erin had fun building sandcastles and making Hunter’s feet disappear under mounds of sand. He seems more at peace by the ocean than anywhere else. I think he enjoys the sound of the waves and the warmth of the sun. Although he continues to have seizures, they don’t last too long and then he seems fine. These fleeting moments of contentment when Hunter is doing well are priceless.
February 15, 2000 (Florida)—Hunter had a new feeding tube put in today. He went from a GT [gastrojejunal] to a JG [jejunostomy] tube. This tube will allow formula to go directly into his intestines rather than his stomach.
We changed his tube because he was getting pneumonia often and the doctors in Florida think he’ll get it much less with the JG. I hope so. His poor little lungs have taken such a beating from all the aspirating. To think that we would know and understand all this feeding tube stuff is crazy. And yet I’m so thankful for all of it—for the suction machine, the feeding pump, and the oxygen—all of it. Everything we have to help Hunter is a gift—everything. He’s a gift!
March 20, 2000 (Florida)—What a horrible day. Hunter’s JG tube slipped out, so we had to rush him to the hospital. The doctor, who we don’t even know, kept trying to thread the tube back in. I held Hunter’s hand the entire time and we ended up being there for four hours. I want to scoop him up and run away. Watching Hunter suffer is excruciating when I can’t do anything about it. Please help him, God. PLEASE!
April 28, 2000 (Attica, NY)—My mother is hysterical. She took Hunter to the Attica Library today and he got his own library card and checked out ten books. Then they strolled down Main Street and stopped at Wayne’s World for some ice cream and then Busy Mart. I’m sure Grammie wanted to give Hunter a taste of her ice cream… my mom thinks Hunter should experience everything he physically can. I get that. I want him to be able to experience and taste certain foods too, but the risk is just too high because he can’t swallow. Which means that if we didn’t suction him in time, he might choke. It’s just not worth the risk.
Still, I struggle with what to do. I shelter him as much as possible, but maybe he needs to be more exposed to the world around him. I have to let go, but it’s hard… so hard.
Hunter went for a ride through the woods in the back of Grandpa’s tractor today, too. My mom said she wants to take Hunter to a shoe store tomorrow, to have him fitted for a new pair of sneakers. And then she and my aunt Dodie plan to take the kids to a farm so they can pet some animals. My mom is amazing. She loves taking Hunter on adventures she knows I would probably be reluctant to take him on.
June 3, 2000—We went to visit Bambi [Hunter